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Developing Sexual and Reproductive Health Educational Resources for Young Women with Cystic Fibrosis: A Structured Approach to Stakeholder Engagement

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Abstract

Purpose

Stakeholder engagement, specifically integration of patient and family perspectives about what matters, is increasingly recognized as a critical component of patient-centered healthcare delivery. This study describes a structured approach to and evaluation of stakeholder engagement in the development of novel sexual and reproductive health (SRH) educational resources for adolescent and young adult (AYA) women with cystic fibrosis (CF).

Methods

Key stakeholders participated in a systematic series of steps to iteratively develop and adapt patient educational resources. Process measures (stakeholder recruitment, composition, co-learning, and transparency) and proximal outcomes of stakeholder involvement (impact on the development process and satisfaction) were measured via recorded stakeholder recommendations and a stakeholder survey.

Results

Seventeen stakeholders participated in seven group and two patient-only conference calls. The majority of stakeholders understood their roles, had their expectations met or exceeded, and were satisfied with the frequency and quality of engagement in the project. All stakeholders in attendance provided multiple concrete recommen-dations during the development process. Stakeholders explored the motivations of AYA women with CF related to SRH and agreed that the ideal resource should be online. After reviewing the design of existing resources, stakeholders decided by consensus to partner with a pre-existing young women’s health website and created 11 CF-specific SRH guides.

Conclusions

This study illuminates a path for a formal process of stakeholder engagement and evaluation in educational resource development centered on the SRH care needs of AYA women with CF. Similar systematic, planned processes could be extended to other populations and aspects of healthcare.

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Acknowledgements

The authors would like to thank the patients, families, and provider stakeholders who provided crucial input and guidance for this project.

Data availability statement

The resulting patient educational health guides can be freely accessed at the Center for Young Women’s Health website (http://bit.ly/cfguides). Notes from all stakeholder meetings and raw data from the anonymous stakeholder survey measuring the engagement process are available.

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Authors and Affiliations

  1. Division of Adolescent and Young Adult Medicine, Department of Pediatrics, UPMC Children’s Hospital of Pittsburgh, University Center, 120 Lytton Ave, Mezzanine Floor Suite M060, Pittsburgh, PA, 15213, USA

    Traci M. Kazmerski & Elizabeth Miller

  2. Center for Women’s Health Research and Innovation (CWHRI), University of Pittsburgh School of Medicine, Pittsburgh, PA, USA

    Traci M. Kazmerski & Elizabeth Miller

  3. Division of Respiratory Diseases, Department of Pediatrics, Boston Children’s Hospital, Boston, MA, USA

    Gregory S. Sawicki, Olga Prushinskaya, Eliza Nelson & Kelsey Hill

  4. Division of Adolescent/Young Adult Medicine, Department of Pediatrics, Boston Children’s Hospital, Boston, MA, USA

    Phaedra Thomas, Anna Miller & S. Jean Emans

Authors
  1. Traci M. Kazmerski
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  2. Elizabeth Miller
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  3. Gregory S. Sawicki
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  4. Phaedra Thomas
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  5. Olga Prushinskaya
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  6. Eliza Nelson
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  7. Kelsey Hill
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  8. Anna Miller
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  9. S. Jean Emans
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Contributions

Dr. Kazmerski conceptualized and designed this work, performed data analysis and led all stakeholder meetings, drafted the initial manuscript, revised the manuscript, and approved the final manuscript as submitted. Dr E. Miller and Dr Sawicki aided in the design of the project, critically revised the manuscript, and approved the final manuscript as submitted. Ms. Thomas, Nelson, Prushinskaya, Hill, and A. Miller aided in resource design and data analysis, and critically revised and approved this manuscript. Dr. Emans provided mentorship to Dr. Kazmerski throughout the project, aided in the design, critically revised the manuscript, and approved the final manuscript as submitted.

Corresponding author

Correspondence to Traci M. Kazmerski.

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Funding

This study was funded by the Cystic Fibrosis Foundation (CFF) [KAZMER16A0].

Conflict of interest

Dr. Kazmerski receives funding from the CFF for a body of research on female SRH, and is a consultant for the CFF Partnership Enhancement Program. Elizabeth Miller, Gregory S. Sawicki, Phaedra Thomas, Olga Prushinskaya, Eliza Nelson, Kelsey Hill, Anna Miller, and S. Jean Emans have no conflicts of interest to declare.

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Kazmerski, T.M., Miller, E., Sawicki, G.S. et al. Developing Sexual and Reproductive Health Educational Resources for Young Women with Cystic Fibrosis: A Structured Approach to Stakeholder Engagement. Patient 12, 267–276 (2019). https://doi.org/10.1007/s40271-018-0342-4

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  • DOI: https://doi.org/10.1007/s40271-018-0342-4

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